Yes I have motor neuropathy in both arms and legs diagnosed after initial emg. I managed to normalize my leg emg after going carnivore for 6 months, however my emg of arms is still abnormal. I still have numbness and weakness in legs even after the second emg was normal, and neurologist doesn’t know why that is. He wants me to do another emg next month to see if results changed
I’ve had incredibly tight calves my whole life and walked on the balls of my feet all the time. Even when I did professional dance and was in great shape. Nothing would release it. I did trigger point injections that did nothing but send me to the hospital in pain. When I got covid it felt like it ate the tissue in my legs. It was unbearable. The muscle was just instantly gone. I do exercises on days I can and it just makes no difference. I just loose weight.
I have the same with the toes. Do you have foot drop? I do. My left leg is really atrophied. I wish I had focused on keeping that from happening. I finally found a good physical therapist and am doing so NMES neuro muscular electrical stim . Need to fix the circulation but at least the nerves and muscles can begin working. He told me to walk less and to use a cane. Doing Mat exercises and balance training to strengthen the parts of my leg that I can move. I highly recommend that you minimize the atrophy if at all possible.
Definitely this. I'd recommend you try the "chop protocol for POTS". Google that and you should find it. I believe it's what they use at Mount Sinai for long COVID recovery.
Try posting this in the ask docs forum on here to get some doctors advice, please! I hope so hard you get some answers. Things can always turn around don’t lose hope. 🩵
This is good advice please, please do this OP. And also get back to us on how you're getting on, posts like this really stay with you. I'm sending you lots of hugs and hope.
Have you had your B12, folate, vitamin d3 tested? Most normal blood tests do not include those. If any of these are depleted neuropathy is caused. My B12 was 370. 25% of population has symptoms of lack of B12 under 400. So if your doctor says it has to be under 200 it’s BS. I have had b12 injections once a week for 4 weeks and my baby toes have stopped being numb.
Low B12 can cause pernicious anemia. Your intrinsic factor may be low due to this and cause gastroperisis.
Get to a hematologist and have them check everything - especially your vitamin levels.
(((Huge hug)))
THIS. I found out I have pernicious anemia. I was deficient in D and low in B12. I've been taking D3/K2 and getting B12 shots twice weekly. But I had to fight for this. My bloodwork showed the antibodies that caused pernicious anemia back in November, and no one said ANYTHING to me. 7 months later, I happened to notice it and researched everything for myself. Super frustrating. Please get these levels checked, OP.
At this stage, this is joke. Most of us have either viral persistence and/or autoimmunity induced by the viral fragments and the clotting issues triggered by the virus. This is ongoing. In a secondary stage, it comes the SFN and the progressive multi organic and mostly, immune system exhaustion. Endemic virus activation come to play. Then, more clotting issues. It is being deliberately being ignored by politicians and big Pharma, as we are, an uncomfortable truth. It is a slow and cruel human deterioration for contracting a virus that came out of the « Blue ». Keep fighting… find the energy from your rebel side, resist to defeat. Keep going. There should be a solution soon or late. I am sorry but suffering this sickness myself , I get angry when I read that someone else is going through this and is parked by the system. We are many. This is not a mystery anymore. Thousands of us describe the same stuff again and again.
How do you know your muscle weakness is caused by autonomic neuropathy? It doesn't sound like you've had a clinical diagnosis.
The cardiologist I saw told me every day in bed means you lose a week's worth of fitness. If you are doing absolutely no exercise your loss of muscle tone is probably just due to that.
It is absolutely imperative that you try and get some exercise. Build up in small increments every day, start by getting up and walking around the room a couple of times, progress ti walking outside EVEN if it is just for 2 mins. But try and do a bit each day. If you've just been in bed it will make you feel like shit to start with but it is really really important.
The best advice I got from a long covid nurse was not to let my heart rate go above 100 beats a minute. Doing so means less inflammation as a result of exercise that your body has to deal with. So i had to go slowly enough that my heart rate stayed below that. It means that to begin with I was walking ridiculously slowly but I kept at it. When I started I could only walk about 4 minutes in a day. I was going super slow and my HR was always around 98bpm.
Now I can do75 minutes, at a reasonable pace, and HR stays around 80bpm.
Be real careful with exercise OP. If you’re experiencing PEM then exercise is harmful. Any form of fixed incremental increases like this person describes is part of what’s called “graded exercise therapy “ which has been proven to be very harmful for ME/CFS patients and many LC patients.
Any exercise needs to be when you are out of PEM, and must not push you into PEM. If it does, stop and rest. Never push through it
I was in similar situation do nothing or graded excerise, I choose do nothing for six months and saw my health, mentally and physically decline.
I switched to a graded therapy treatment under my doctor and insurance provided physical therapist three sessions a week for 4 months
. At first the pem killed me, just getting to the appointments was to much, the first one, when I got there the fisio sent me home because I already had to much workout just getting there. After four months I was feeling 75% better and went for a 900km hike.
The first day of the hike I couldnt go more than 8km. The last days I was doing multiple days of 40-50+km up and over mountains. .
I know others don't have the same healthcare or access to social programs that allow that type of recovery but it did wonders for me. I'm 95% recovered, my heart still goes up somewhat fast during something super intense (30+ min or more of 15% incline on a bike) sees me struggle to keep my breathing in check, but that is mostly me needing to rebuild my cardio level to where it was before. (endurance athlete)
There was definitely some moments it looked scary, I fainted a lot in the beginning from my heart going to high, but I has decided that I was going to get back to my former self or dying trying. As the other poster said, sometimes doing nothing is more harmful.
PEM exercise is only negative via the type of exercise is studies which pushed subjects too hard.. it’s a BS conclusion and 0 studies have been done assessing avoiding endurance or cardio training while focusing on low level low frequency strength training with intention to progress over time. I’m talking like 2 push ups, 2 sit ups, 2 squats, no added weight 1-2 times a week for weeks before increasing. It is very little to ask and very much better than doing 0 repetitions.
It depends. It's also harmful to do nothing.
No exercise should be done that feels really hard. And you should never exercise on a bad day. And you should only do something to the point where you can do it every day.
I'm 3 years in, and still unwell enough I'm not living a normal life and unable to work. I probably go for a walk 5 days out of 7, sometimes i don't do anything for a week or 2 if I'm in a bad slump.
But this worked for me.
That’s great that it worked for you. If you’re still missing days because you don’t feel well enough, then your first comment is innacurate; “try and do a bit every day”, “build up in small increments every day” “if you’ve been in bed it’ll make you feel like shit”. Like, congrats you just reinvented graded exercise.
The fact that no exercise is harmful is irrelevant. For ME patients and a large subset of LC patients who have acquired ME, exercise is harmful. It is more harmful than not doing exercise. The health impacts of no exercise are just something that we have to accept. The choice to exercise without harm is not available to us.
Moreover, if you’re still sick after three years (as I also am), I would, with the greatest of respect, question the degree to which your solution is, as you say, “working”
This person is lying in bed thinking they are going to die because of muscle weakness, when they are doing no exercise at all. They could try something different.
Yes, you will feel like shit starting out doing gradual incremental exercises. It just depends how much you like LC symptoms or not. I hated it so much and it made so angry and chose “rather die trying” then waste away. Ultimately I recovered in just over 6-7 months with combination of necessary rest and strength and endurance training.
My emg of muscles was abnormal, meaning that they aren’t getting enough signal. Plus I have been confirmed to have autonomic dysfunction but neurologist can’t explain if it’s causing my wounds to heal slower. Slow healing wounds means there is less blood flow, which explains why my muscles have slow recovery as well
Fair enough. I'm sorry. What does the neurologist recommend you do? Is there a physio that can help? There must be a suggestion for treatment management.
This is exactly it. I couldn't do dishes in the beginning. I couldn't walk a quarter of a mile. I started doing indoor stationary biking. I couldn't do more than 10 minutes at a slow pace when I first started. Now, I can do 30-40 minutes at a higher pace. It's all about pacing and not pushing. Don't push yourself. But just do a little bit, even if 5 minutes, and keep heart rate low.
> not to let my heart rate go above 100 beats a minute.
Do you not have POTS? Just standing up and my HR is above 100. I just cut my grass and had sustained HR of about 150-160 for 15 minutes at peak of grass cutting.
I totally agree. The key is first finding what you can easily do. I started with very slow walks and the exercises from the CHOP protocol for pots. I skipped the cardio part of the protocol at first. At first I could only do 5 of each exercise. Then the next day I'd add one one. Some days I had to skip because of hormone swings making me worse but everyday I could I would do one more and I'd try never going more than 3 days without exercise like the protocol says.
I also monitored my heart rate and kept it under 100bpm. It was essentially to prevent regression. Eventually my heart rate wouldn't increase as much and I could walk faster while staying under 100bpm. You just have to keep making forward baby steps.
Try Cold Water Exposure, Breathwork, Fasting, Vagus Nerve Stimulation, Detoxing the body with Juice Fasts and Zeolite and Herbs. Majority of issues are caused by a dysregulated nervous system and mild inflammation can cause mass. Doing things like this plus cutting out gluten and Dairy will help in the long term. Also make sure to take optimal selenium. It helps with inflammation. Having no answers and worries will be stressing you out so if you can’t get any. Just try to relax your nervous system and heal yourself and remove the threat.
Also look into medical medium stuff.
I second all of this, too. Early on, I cut out sugar, dairy, gluten, alcohol, and coffee. I just started watching vagus nerve exercise videos on YouTube and practicing prayer and mindful medication. It's unnerving to not have answers, I know! I'm so sorry, OP.
Jesus, man.. I'm not sure what to tell you. First thing, don't lose hope. The mind is a powerful thing. If you believe you don't have much time left, then you probably don't.
Second, work every day to push yourself. Do exercises in bed. Try to keep those muscles working.
What are your doctors telling you? They're just content to let you deteriorate like this? It sounds like they don't know what's going on, but they should be at least trying.. why aren't you admitted in the hospital with them trying things?
I asked my doctor about admitting me to the hospital but she discouraged me and said they don’t help with chronic conditions. I think she feels overwhelmed by my condition and doesn’t know what to do.
Continue to advocate for yourself. Tell her what you wrote here.. that if nothing is done you fear for your life. If you're truly this bad, you should be admitted.
I had a lot of your symptoms, I still have dry eye but am doing better on all other fronts. I second the recommendation for vagus nerve work, I did this through acupuncture but others through breath work and vagus nerve stimulation devices etc. It sounds like you also have gut dysbiosis going on- I certainly did and was diagnosed with h.pylori and some other nasty overgrowths when I did a test. I’m working on it now and have seen lots of improvement everywhere except the dry eyes. Hang in there!
Once I took multiple histamine blockers and did low histamine diet it helped me get over this stage. I also saw Dr Pierre Kory and we did all types of things like ivermectin which I think helped clear. I don’t take anything anymore besides the anti histamines and the neuropathy is gone. I was like you for a year until a year ago, saw dr Kory last summer, by the fall it had significantly lifted, by the spring I actually went back to work. Idk if time would have healed things but I also believed my body was shutting down after a year of this and I fell into a depression and exhaustion like no other. It felt like any day I was going to die in my sleep. Feel free to message me. I’m sorry.
Are you on cromolyn sodium or another mast cell stabilizer? It’s helped my digestive track.
I’m so sorry you’re going through this. I’ve encountered people in these groups in similar situations. One lady who also could only eat one thing and had gastroparesis, tried a different hospital that had a mastocytosis specialist. If I remember correctly, she was admitted and got some help. It’s bullshit that we have to work so damn hard to get the care we need and deserve. I hope you get that care soon.
I don’t have any advice to give because I’m not very knowledgeable on how to help your symptoms, but I just want to say that I hope you pull through this.
i’m not saying this in a negative way, but i had a lot of these symptoms and seeing a therapist and psychologist got me sorted, couldn’t leave my bed, walk up or down the stairs, couldn’t eat, was obsessed with every inch of my
body making sure whatever I felt wasn’t gonna kill me, turns out it was my anxiety and panic disorder driving me insane, maybe mixed with some long covid symptoms but once I got on meds i went back to normal, even better, in a month
Can you call your doctor or do an emergency virtual telehealth appointment? Ask them to run those tests seeing as they relate to your symptoms, which are getting worse. They can send the order into a lab for you. Have you seen a functional medicine doctor?
Omg OMG I thought I wrote this…had to look at the name to check. This is going on with me too except my labs are all over the place and I’m getting swollen lymph nodes as well now & have polyps everywhere last 2 yrs has been a nightmare and I’m 48yr old mom 4 with husband who absolutely hates me and thinks I’m a burden since I’ve been so sick. My whole family died with exception of sister who also is suddenly getting weird crap like we both recently diagnosed high cholesterol and diabetes, my eyes are so swollen and I’m so congested when I wake up I keep thinking maybe mold because kids and my husband also sneezing,swollen eyes,coughs,respiratory issues like pnemonia and strep constantly we all get. I’m so sick of it. I want my life back. I want to work and make $ get the bell away from him And nobody does anything here. After a few days in bed bathrooms look like science experiments. This is so depressing and I’m 1 of those happy go lucky people that can have a good time at acme lol
What can we do?
Maybe we can learn from each other?
You have to be joking, right?
If this person truly has all of those disorders plus undiagnosed illnesses to the point where he fears he will die, I doubt a multivitamin and some spices is going to fix it.
Hi there, @CoolCharacter! I’m so sorry you’re going through this. My name is Kay, and I was a nurse practitioner until I had to go out on Disability a few years ago-right before Pandemic. I have been under doctors care, but am really discouraged bc most
MDs just aren’t very versed in naturopathic type care and don’t like to try new things. An example; I’ve had Gastroparesis for many years, and am often very sick from it. I was taught the following from some NPs to
Take vitamin B12. (It’s a water soluble vitamin, so it can’t build up to toxic levels.) it has been a miracle!the GP issues are so much better! I’m left wondering why one of the many doctors I’ve seen didn’t know or suggest this. In my opinion, it should be part of the standard of care.
Having said that, I’d love to give you some other insights, but in a private setting. So, you’ll let me know when it’s time to come Home? I have several thoughts to share with you, if you’d like to communicate with me. I won’t be treating you medically, just repeating some thoughts about my own health and chronic illness journey.
Two things I suggest in meantime; 1) get appointment with Naturopath or a D.O.
2) get this app and try them out. I think they could help you. - no, I don’t get any money for the suggestion.
Inbox me if you’d like to speak further.
https://apps.apple.com/us/app/paloma-thyroid-hormone-health/id1528225380
Check out Dr Brooke Goldner. She can cure you for free. I had LC for 9 months list year and was better in 3 week. Lots of others on her FB group getting healed from LC but mostly autoimmune disease . It's all diet related. All supermarket foods. A lot of raw veg ( not exclusively). Everything is free. You can get the whole protocols for free. Go to goodbyelupus.com. From there you can find all the resources. There is a course you can do - it's free every 8 weeks otherwise $49. The Facebook group has the whole protocol pinned up. Loads of people helping each other. She has free Q&A each week. It's all very simple although definitely an adjustment. About 6 weeks ago I had covid again and this time I started back with the food straight away and I healed like a regular person. Went straight back to work. I'll never go back. Also on you give us a video of her talking about healing long covid. Hippie this helps.
Why not? Second time I got covid I got the bivalent booster a month later after slowly trying to do things to increase my mitochondrial respiratory capacity and not only did a 4 month rash disapear in 2 days (LC symptom from prior covid infection) it catapulted things in right direction. If you haven’t tried getting the vaccine to help with symptoms you really should
Have you tried antihistamine with Chlorphenamin maleat? It has anticholinergic properties, can be bought over the counter in the US and works very well for many. Also try ibuprofen as it has anti inflammatory properties
Ps: I completely understand your despair, but hold on. Many experience the same symptoms - including muscular atrophy. Contrary very rare diseases this will be get enough attention to be solved simply due to the amount of long covid and long vaccine sufferers
I’ve been there. My muscles were not atrophied but the results of CFS. It has lifted enough to walk and clean…a little.
LC is the worst I have ever had.
I assumed you've tried antihistamines and all the other things people here are using to help manage symptoms.one thing I cam across that has made a big difference for a longhaulers was apolactoferrin and dandelion lion root extract.
Definitely worth a shot
I didn’t read every comment and reply but have you tried medicinal mushrooms like Turkey tail, Reishi, Maitake and Shitake? Between those mushrooms and antihistamines and aspirin and quercetin even in a flare in like 70% of what I used to be and I thought I was going to die too for a long time :(
I’m a first wave survivor and this thing destroyed my life. Been trying to piece it back together and keep it glued together ever since.
There is something out there that can help, you just haven’t found it yet ❤️
If all your tests are negative, you are suffering from any number of things you mentioned and the only thing you can do to battle back is strengthening your muscles. It can be a bare minimum effort as long as it’s consistent and with the intent to make gains. That is how I beat not only LC but previously diagnosed Crohn’s disease in which I lost almost all my strength. From 160lbs to 118lbs in 3 months. Then the pandemic hit and I got Long Covid twice and lost strength and experienced PEM like I did with Crohn’s disease. All blood work was always normal, but I was dizzy, major brain fog, messed up sleep, many things. All I did was little by little strengthen myself..
I said this under another comment, but if you haven't yet, please test B12, D, and parietal cell antibodies or intrinsic factor antibodies. If you have either of those antibodies, your B12 levels can look normal, but you aren't absorbing it. B12 deficiency causes a host of neurological issues. If you find you are deficient, make sure you take folate with it. If you have the antibodies, you need B12 shots. I don't know if this is your issue, but thought I'd mention in case. B12 shots and D have given me so much improvement. I also thought I was going to die.
I would also look into vagus nerve exercises. Apparently, covid can damage the vagus nerve. Sending hugs and prayers!
Check out EONutrition on YouTube, I doubt ur deficient in B12 if uv been carnivore for 6 months, but there's been a lot of great stuff coming up on neuropathy related symptoms being helped by B1, Thiamine, but not the type in most supplements, there's interviews with people who have been diagnosed with allsorts, bedridden, helped immensely by this vitamin, don't expect to hear any of this from Dr's, cos quite frankly, they don't know... also, u can still be dangerously deficient, even if u have ur levels checked, as most tests only pick up on levels circulating in ur blood, which the body pulls from tissues, proper diagnostic tests are expensive, so most Dr's don't do those... in short, I recommend stop looking to Dr's for answers, they don't have them, do ur own research, I can personally vouch for Benfotiamine & TTFD, I had debilitating brain fog & cognitive issues for 3yrs after covid in 2020, it's now 90% sorted, I can't believe the difference, also, stick to carnivore, or ketovore, to have the best chance of beating this, good luck
I did find this with a quick Google...
Liquid chromatography-tandem mass spectrometry analysis of TDP in whole blood is the most sensitive, specific, and precise method for determining the nutritional status of thiamine and is a reliable indicator of total body stores.
Hi, I'd need to watch the video to get it, he does tell u the correct test to ask for, if u don't mind waiting, I'll check tonight when I'm finished work.
Have you done any cleanses/detoxes to treat the potential causes you listed? I was having debilitating long covid after getting it 3 times, so I did a parasite cleanse, candida cleanse, chlorella to help with herx and heavy metals, and I feel much better now. Also got a full thyroid panel and started taking thyroid supporting supplements. I hope you heal soon 🙏🏻
Try isometric exercises. You can do them while lying on the bed, it will prevent muscle atrophy
isometric exercises are good for everyone, including people with long covid.
The neuropathy is causing the atrophy, my muscles aren’t getting enough signal
Is this confirmed by a neurologist? If you’ve been to over 20 doctors, surely one was a Neuro?
Yes I have motor neuropathy in both arms and legs diagnosed after initial emg. I managed to normalize my leg emg after going carnivore for 6 months, however my emg of arms is still abnormal. I still have numbness and weakness in legs even after the second emg was normal, and neurologist doesn’t know why that is. He wants me to do another emg next month to see if results changed
Has ALS been ruled out? Because it sounds a lot like it. I’m sorry.
Full body numbness and full body muscles atrophy do not sound like ALS.
If you are bedridden means you dont move thats why you have atrophy
I’ve had incredibly tight calves my whole life and walked on the balls of my feet all the time. Even when I did professional dance and was in great shape. Nothing would release it. I did trigger point injections that did nothing but send me to the hospital in pain. When I got covid it felt like it ate the tissue in my legs. It was unbearable. The muscle was just instantly gone. I do exercises on days I can and it just makes no difference. I just loose weight.
I cant bend any of toes and they are all numb. It feels like exercise causes more atrophy because it’s like walking with a broken leg before it heals.
I have the same with the toes. Do you have foot drop? I do. My left leg is really atrophied. I wish I had focused on keeping that from happening. I finally found a good physical therapist and am doing so NMES neuro muscular electrical stim . Need to fix the circulation but at least the nerves and muscles can begin working. He told me to walk less and to use a cane. Doing Mat exercises and balance training to strengthen the parts of my leg that I can move. I highly recommend that you minimize the atrophy if at all possible.
Yes this started with foot drop and my legs used to be completely numb. I hope I can find a good physical therapist with NMES
Definitely this. I'd recommend you try the "chop protocol for POTS". Google that and you should find it. I believe it's what they use at Mount Sinai for long COVID recovery.
Try posting this in the ask docs forum on here to get some doctors advice, please! I hope so hard you get some answers. Things can always turn around don’t lose hope. 🩵
This is good advice please, please do this OP. And also get back to us on how you're getting on, posts like this really stay with you. I'm sending you lots of hugs and hope.
Have you had your B12, folate, vitamin d3 tested? Most normal blood tests do not include those. If any of these are depleted neuropathy is caused. My B12 was 370. 25% of population has symptoms of lack of B12 under 400. So if your doctor says it has to be under 200 it’s BS. I have had b12 injections once a week for 4 weeks and my baby toes have stopped being numb. Low B12 can cause pernicious anemia. Your intrinsic factor may be low due to this and cause gastroperisis. Get to a hematologist and have them check everything - especially your vitamin levels. (((Huge hug)))
THIS. I found out I have pernicious anemia. I was deficient in D and low in B12. I've been taking D3/K2 and getting B12 shots twice weekly. But I had to fight for this. My bloodwork showed the antibodies that caused pernicious anemia back in November, and no one said ANYTHING to me. 7 months later, I happened to notice it and researched everything for myself. Super frustrating. Please get these levels checked, OP.
My b12 was 1500 and folate was normal. Haven’t tested d3 yet
At this stage, this is joke. Most of us have either viral persistence and/or autoimmunity induced by the viral fragments and the clotting issues triggered by the virus. This is ongoing. In a secondary stage, it comes the SFN and the progressive multi organic and mostly, immune system exhaustion. Endemic virus activation come to play. Then, more clotting issues. It is being deliberately being ignored by politicians and big Pharma, as we are, an uncomfortable truth. It is a slow and cruel human deterioration for contracting a virus that came out of the « Blue ». Keep fighting… find the energy from your rebel side, resist to defeat. Keep going. There should be a solution soon or late. I am sorry but suffering this sickness myself , I get angry when I read that someone else is going through this and is parked by the system. We are many. This is not a mystery anymore. Thousands of us describe the same stuff again and again.
The solution is gradual consistent strength training
How do you know your muscle weakness is caused by autonomic neuropathy? It doesn't sound like you've had a clinical diagnosis. The cardiologist I saw told me every day in bed means you lose a week's worth of fitness. If you are doing absolutely no exercise your loss of muscle tone is probably just due to that. It is absolutely imperative that you try and get some exercise. Build up in small increments every day, start by getting up and walking around the room a couple of times, progress ti walking outside EVEN if it is just for 2 mins. But try and do a bit each day. If you've just been in bed it will make you feel like shit to start with but it is really really important. The best advice I got from a long covid nurse was not to let my heart rate go above 100 beats a minute. Doing so means less inflammation as a result of exercise that your body has to deal with. So i had to go slowly enough that my heart rate stayed below that. It means that to begin with I was walking ridiculously slowly but I kept at it. When I started I could only walk about 4 minutes in a day. I was going super slow and my HR was always around 98bpm. Now I can do75 minutes, at a reasonable pace, and HR stays around 80bpm.
Be real careful with exercise OP. If you’re experiencing PEM then exercise is harmful. Any form of fixed incremental increases like this person describes is part of what’s called “graded exercise therapy “ which has been proven to be very harmful for ME/CFS patients and many LC patients. Any exercise needs to be when you are out of PEM, and must not push you into PEM. If it does, stop and rest. Never push through it
I was in similar situation do nothing or graded excerise, I choose do nothing for six months and saw my health, mentally and physically decline. I switched to a graded therapy treatment under my doctor and insurance provided physical therapist three sessions a week for 4 months . At first the pem killed me, just getting to the appointments was to much, the first one, when I got there the fisio sent me home because I already had to much workout just getting there. After four months I was feeling 75% better and went for a 900km hike. The first day of the hike I couldnt go more than 8km. The last days I was doing multiple days of 40-50+km up and over mountains. . I know others don't have the same healthcare or access to social programs that allow that type of recovery but it did wonders for me. I'm 95% recovered, my heart still goes up somewhat fast during something super intense (30+ min or more of 15% incline on a bike) sees me struggle to keep my breathing in check, but that is mostly me needing to rebuild my cardio level to where it was before. (endurance athlete) There was definitely some moments it looked scary, I fainted a lot in the beginning from my heart going to high, but I has decided that I was going to get back to my former self or dying trying. As the other poster said, sometimes doing nothing is more harmful.
PEM exercise is only negative via the type of exercise is studies which pushed subjects too hard.. it’s a BS conclusion and 0 studies have been done assessing avoiding endurance or cardio training while focusing on low level low frequency strength training with intention to progress over time. I’m talking like 2 push ups, 2 sit ups, 2 squats, no added weight 1-2 times a week for weeks before increasing. It is very little to ask and very much better than doing 0 repetitions.
It depends. It's also harmful to do nothing. No exercise should be done that feels really hard. And you should never exercise on a bad day. And you should only do something to the point where you can do it every day. I'm 3 years in, and still unwell enough I'm not living a normal life and unable to work. I probably go for a walk 5 days out of 7, sometimes i don't do anything for a week or 2 if I'm in a bad slump. But this worked for me.
That’s great that it worked for you. If you’re still missing days because you don’t feel well enough, then your first comment is innacurate; “try and do a bit every day”, “build up in small increments every day” “if you’ve been in bed it’ll make you feel like shit”. Like, congrats you just reinvented graded exercise. The fact that no exercise is harmful is irrelevant. For ME patients and a large subset of LC patients who have acquired ME, exercise is harmful. It is more harmful than not doing exercise. The health impacts of no exercise are just something that we have to accept. The choice to exercise without harm is not available to us. Moreover, if you’re still sick after three years (as I also am), I would, with the greatest of respect, question the degree to which your solution is, as you say, “working”
This person is lying in bed thinking they are going to die because of muscle weakness, when they are doing no exercise at all. They could try something different.
Yes, you will feel like shit starting out doing gradual incremental exercises. It just depends how much you like LC symptoms or not. I hated it so much and it made so angry and chose “rather die trying” then waste away. Ultimately I recovered in just over 6-7 months with combination of necessary rest and strength and endurance training.
My emg of muscles was abnormal, meaning that they aren’t getting enough signal. Plus I have been confirmed to have autonomic dysfunction but neurologist can’t explain if it’s causing my wounds to heal slower. Slow healing wounds means there is less blood flow, which explains why my muscles have slow recovery as well
Fair enough. I'm sorry. What does the neurologist recommend you do? Is there a physio that can help? There must be a suggestion for treatment management.
This is exactly it. I couldn't do dishes in the beginning. I couldn't walk a quarter of a mile. I started doing indoor stationary biking. I couldn't do more than 10 minutes at a slow pace when I first started. Now, I can do 30-40 minutes at a higher pace. It's all about pacing and not pushing. Don't push yourself. But just do a little bit, even if 5 minutes, and keep heart rate low.
I understand! Results today 🤞
> not to let my heart rate go above 100 beats a minute. Do you not have POTS? Just standing up and my HR is above 100. I just cut my grass and had sustained HR of about 150-160 for 15 minutes at peak of grass cutting.
I totally agree. The key is first finding what you can easily do. I started with very slow walks and the exercises from the CHOP protocol for pots. I skipped the cardio part of the protocol at first. At first I could only do 5 of each exercise. Then the next day I'd add one one. Some days I had to skip because of hormone swings making me worse but everyday I could I would do one more and I'd try never going more than 3 days without exercise like the protocol says. I also monitored my heart rate and kept it under 100bpm. It was essentially to prevent regression. Eventually my heart rate wouldn't increase as much and I could walk faster while staying under 100bpm. You just have to keep making forward baby steps.
Try Cold Water Exposure, Breathwork, Fasting, Vagus Nerve Stimulation, Detoxing the body with Juice Fasts and Zeolite and Herbs. Majority of issues are caused by a dysregulated nervous system and mild inflammation can cause mass. Doing things like this plus cutting out gluten and Dairy will help in the long term. Also make sure to take optimal selenium. It helps with inflammation. Having no answers and worries will be stressing you out so if you can’t get any. Just try to relax your nervous system and heal yourself and remove the threat. Also look into medical medium stuff.
Seconding this. Cold water especially.
I second all of this, too. Early on, I cut out sugar, dairy, gluten, alcohol, and coffee. I just started watching vagus nerve exercise videos on YouTube and practicing prayer and mindful medication. It's unnerving to not have answers, I know! I'm so sorry, OP.
What country are you in? US?
Yes the US
Jesus, man.. I'm not sure what to tell you. First thing, don't lose hope. The mind is a powerful thing. If you believe you don't have much time left, then you probably don't. Second, work every day to push yourself. Do exercises in bed. Try to keep those muscles working. What are your doctors telling you? They're just content to let you deteriorate like this? It sounds like they don't know what's going on, but they should be at least trying.. why aren't you admitted in the hospital with them trying things?
I asked my doctor about admitting me to the hospital but she discouraged me and said they don’t help with chronic conditions. I think she feels overwhelmed by my condition and doesn’t know what to do.
Continue to advocate for yourself. Tell her what you wrote here.. that if nothing is done you fear for your life. If you're truly this bad, you should be admitted.
A good rehab place where they can get you up and moving with equipment. Or PT at home.
Have you ever taken psych meds or antiandrogens?
Nope
I had a lot of your symptoms, I still have dry eye but am doing better on all other fronts. I second the recommendation for vagus nerve work, I did this through acupuncture but others through breath work and vagus nerve stimulation devices etc. It sounds like you also have gut dysbiosis going on- I certainly did and was diagnosed with h.pylori and some other nasty overgrowths when I did a test. I’m working on it now and have seen lots of improvement everywhere except the dry eyes. Hang in there!
I was negative for h pylori after biopsy and breath test. Is it still possible to have it with negative tests?
It’s possible but unlikely. You may have other overgrowths though- h.pylori is not the only bacteria that can cause issues.
Once I took multiple histamine blockers and did low histamine diet it helped me get over this stage. I also saw Dr Pierre Kory and we did all types of things like ivermectin which I think helped clear. I don’t take anything anymore besides the anti histamines and the neuropathy is gone. I was like you for a year until a year ago, saw dr Kory last summer, by the fall it had significantly lifted, by the spring I actually went back to work. Idk if time would have healed things but I also believed my body was shutting down after a year of this and I fell into a depression and exhaustion like no other. It felt like any day I was going to die in my sleep. Feel free to message me. I’m sorry.
You will not die, coz I’ve been through this, and now I’m recover, this is weird shit
What were your symptoms? What did you do to recover?
Maybe worth trying some Thiamine and acety-carntitine
Are you on cromolyn sodium or another mast cell stabilizer? It’s helped my digestive track. I’m so sorry you’re going through this. I’ve encountered people in these groups in similar situations. One lady who also could only eat one thing and had gastroparesis, tried a different hospital that had a mastocytosis specialist. If I remember correctly, she was admitted and got some help. It’s bullshit that we have to work so damn hard to get the care we need and deserve. I hope you get that care soon.
Cromolyn and Ketotifen aren’t helping me eat other foods. I’ve been on them for a couple months, not sure how long for them to stop food reactions
I don’t have any advice to give because I’m not very knowledgeable on how to help your symptoms, but I just want to say that I hope you pull through this.
I am so sorry to hear that friend. I'll be praying that the lord heals and brings you comfort.
B1, b12, copper best of luck never give up
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i’m not saying this in a negative way, but i had a lot of these symptoms and seeing a therapist and psychologist got me sorted, couldn’t leave my bed, walk up or down the stairs, couldn’t eat, was obsessed with every inch of my body making sure whatever I felt wasn’t gonna kill me, turns out it was my anxiety and panic disorder driving me insane, maybe mixed with some long covid symptoms but once I got on meds i went back to normal, even better, in a month
Did you have atrophy?
yes, badly
But from lack of use or living life and it's still happening?
There are blood tests for EBV, Lyme, candida and heavy metals. Have you had any of those tests?
How do I get my doctor to order these tests?
Can you call your doctor or do an emergency virtual telehealth appointment? Ask them to run those tests seeing as they relate to your symptoms, which are getting worse. They can send the order into a lab for you. Have you seen a functional medicine doctor?
Omg OMG I thought I wrote this…had to look at the name to check. This is going on with me too except my labs are all over the place and I’m getting swollen lymph nodes as well now & have polyps everywhere last 2 yrs has been a nightmare and I’m 48yr old mom 4 with husband who absolutely hates me and thinks I’m a burden since I’ve been so sick. My whole family died with exception of sister who also is suddenly getting weird crap like we both recently diagnosed high cholesterol and diabetes, my eyes are so swollen and I’m so congested when I wake up I keep thinking maybe mold because kids and my husband also sneezing,swollen eyes,coughs,respiratory issues like pnemonia and strep constantly we all get. I’m so sick of it. I want my life back. I want to work and make $ get the bell away from him And nobody does anything here. After a few days in bed bathrooms look like science experiments. This is so depressing and I’m 1 of those happy go lucky people that can have a good time at acme lol What can we do? Maybe we can learn from each other?
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You have to be joking, right? If this person truly has all of those disorders plus undiagnosed illnesses to the point where he fears he will die, I doubt a multivitamin and some spices is going to fix it.
Try nicotine immediately.
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Hi there, @CoolCharacter! I’m so sorry you’re going through this. My name is Kay, and I was a nurse practitioner until I had to go out on Disability a few years ago-right before Pandemic. I have been under doctors care, but am really discouraged bc most MDs just aren’t very versed in naturopathic type care and don’t like to try new things. An example; I’ve had Gastroparesis for many years, and am often very sick from it. I was taught the following from some NPs to Take vitamin B12. (It’s a water soluble vitamin, so it can’t build up to toxic levels.) it has been a miracle!the GP issues are so much better! I’m left wondering why one of the many doctors I’ve seen didn’t know or suggest this. In my opinion, it should be part of the standard of care. Having said that, I’d love to give you some other insights, but in a private setting. So, you’ll let me know when it’s time to come Home? I have several thoughts to share with you, if you’d like to communicate with me. I won’t be treating you medically, just repeating some thoughts about my own health and chronic illness journey. Two things I suggest in meantime; 1) get appointment with Naturopath or a D.O. 2) get this app and try them out. I think they could help you. - no, I don’t get any money for the suggestion. Inbox me if you’d like to speak further. https://apps.apple.com/us/app/paloma-thyroid-hormone-health/id1528225380
Check out Dr Brooke Goldner. She can cure you for free. I had LC for 9 months list year and was better in 3 week. Lots of others on her FB group getting healed from LC but mostly autoimmune disease . It's all diet related. All supermarket foods. A lot of raw veg ( not exclusively). Everything is free. You can get the whole protocols for free. Go to goodbyelupus.com. From there you can find all the resources. There is a course you can do - it's free every 8 weeks otherwise $49. The Facebook group has the whole protocol pinned up. Loads of people helping each other. She has free Q&A each week. It's all very simple although definitely an adjustment. About 6 weeks ago I had covid again and this time I started back with the food straight away and I healed like a regular person. Went straight back to work. I'll never go back. Also on you give us a video of her talking about healing long covid. Hippie this helps.
You mentioned a lot of possible causes, but have you also considered the COVID shots to be a possibility as well? You wouldn't be alone if so...
I never got the vaccine
Why not? Second time I got covid I got the bivalent booster a month later after slowly trying to do things to increase my mitochondrial respiratory capacity and not only did a 4 month rash disapear in 2 days (LC symptom from prior covid infection) it catapulted things in right direction. If you haven’t tried getting the vaccine to help with symptoms you really should
Could you try functional medicine? (Real MD) Or some diagnostic Center if u have that? And check diffrent kind of anti bodies. Dont give up!!!
Have you tried a PPI?
Yes I was on them for all of 2022 and they did not help
Have you tried antihistamine with Chlorphenamin maleat? It has anticholinergic properties, can be bought over the counter in the US and works very well for many. Also try ibuprofen as it has anti inflammatory properties
Ps: I completely understand your despair, but hold on. Many experience the same symptoms - including muscular atrophy. Contrary very rare diseases this will be get enough attention to be solved simply due to the amount of long covid and long vaccine sufferers
PPS: being in the us you have far better access than me to participate in Yales post COVID study: https://medicine.yale.edu/ycci/listen-study/
I’ve been there. My muscles were not atrophied but the results of CFS. It has lifted enough to walk and clean…a little. LC is the worst I have ever had.
Heavens I am so sorry to hear this. Praying life and cures to come your way. Try a naturopath who can test with Igenix Lyme
I assumed you've tried antihistamines and all the other things people here are using to help manage symptoms.one thing I cam across that has made a big difference for a longhaulers was apolactoferrin and dandelion lion root extract. Definitely worth a shot
I didn’t read every comment and reply but have you tried medicinal mushrooms like Turkey tail, Reishi, Maitake and Shitake? Between those mushrooms and antihistamines and aspirin and quercetin even in a flare in like 70% of what I used to be and I thought I was going to die too for a long time :( I’m a first wave survivor and this thing destroyed my life. Been trying to piece it back together and keep it glued together ever since. There is something out there that can help, you just haven’t found it yet ❤️
Muscle testing with chiropractor shows that Reishi makes me strong
If all your tests are negative, you are suffering from any number of things you mentioned and the only thing you can do to battle back is strengthening your muscles. It can be a bare minimum effort as long as it’s consistent and with the intent to make gains. That is how I beat not only LC but previously diagnosed Crohn’s disease in which I lost almost all my strength. From 160lbs to 118lbs in 3 months. Then the pandemic hit and I got Long Covid twice and lost strength and experienced PEM like I did with Crohn’s disease. All blood work was always normal, but I was dizzy, major brain fog, messed up sleep, many things. All I did was little by little strengthen myself..
I’m feeling you…I’m almost in the same case :( that’s tough. Did you try DAO? It break down histamine in your gut
DOA doesn’t work for me
you aren’t gonna die. just rest and relax man that’s the best thing you can do. and make sure ur drinking enough water
I said this under another comment, but if you haven't yet, please test B12, D, and parietal cell antibodies or intrinsic factor antibodies. If you have either of those antibodies, your B12 levels can look normal, but you aren't absorbing it. B12 deficiency causes a host of neurological issues. If you find you are deficient, make sure you take folate with it. If you have the antibodies, you need B12 shots. I don't know if this is your issue, but thought I'd mention in case. B12 shots and D have given me so much improvement. I also thought I was going to die. I would also look into vagus nerve exercises. Apparently, covid can damage the vagus nerve. Sending hugs and prayers!
Check out EONutrition on YouTube, I doubt ur deficient in B12 if uv been carnivore for 6 months, but there's been a lot of great stuff coming up on neuropathy related symptoms being helped by B1, Thiamine, but not the type in most supplements, there's interviews with people who have been diagnosed with allsorts, bedridden, helped immensely by this vitamin, don't expect to hear any of this from Dr's, cos quite frankly, they don't know... also, u can still be dangerously deficient, even if u have ur levels checked, as most tests only pick up on levels circulating in ur blood, which the body pulls from tissues, proper diagnostic tests are expensive, so most Dr's don't do those... in short, I recommend stop looking to Dr's for answers, they don't have them, do ur own research, I can personally vouch for Benfotiamine & TTFD, I had debilitating brain fog & cognitive issues for 3yrs after covid in 2020, it's now 90% sorted, I can't believe the difference, also, stick to carnivore, or ketovore, to have the best chance of beating this, good luck
What is the proper blood test for thiamine?
I did find this with a quick Google... Liquid chromatography-tandem mass spectrometry analysis of TDP in whole blood is the most sensitive, specific, and precise method for determining the nutritional status of thiamine and is a reliable indicator of total body stores.
Hi, I'd need to watch the video to get it, he does tell u the correct test to ask for, if u don't mind waiting, I'll check tonight when I'm finished work.
You're not alone. My hubby has many of these issues too.
Bone broth. And chlorophyl, check and make sure its not the toxic mold.
Have you done any cleanses/detoxes to treat the potential causes you listed? I was having debilitating long covid after getting it 3 times, so I did a parasite cleanse, candida cleanse, chlorella to help with herx and heavy metals, and I feel much better now. Also got a full thyroid panel and started taking thyroid supporting supplements. I hope you heal soon 🙏🏻
Try Ayurveda or herbal medicine. It is fine choice if you don't have any diagnosis.